to think that coeliac disease implies symptoms?

[RaspberryCoulis]

Family member has 2 teenage sons, Adam and Ben. At the beginning of lockdown, she was all over social media with posts about how Adam had been diagnosed with coeliac disease, how it had turned their house upside down, all the recipe books out the window. Died down a bit with the posting over summer. Now lo and behold Ben has been diagnosed too and the posting (and lots of talking about it) has started up again.

Lots of people questioning what the symptoms were - they had none. Ben reports "feeling odd" after eating bread.

Diagnosis - the mother (who isn't a doctor, but who is an allied professional like a physiotherapist), send blood and stool samples off in the post and received their "diagnosis".

On the one hand, going gluten free isn't going to damage their health.

On the other, it's a bit much to diagnose your teenagers with a serious illness based on an internet test, and tell them they must completely change their eating habits? (No McDonalds, no Greggs, no Subway). When they have no symptoms?

Or can you have asymptomatic coeliac disease?

You can have asymptomatic coeliac disease, however the gold standard for diagnosing coeliac disease is a intestinal biopsy to show the classic atrophy of the villi in the intestine. Blood tests are used to measure TTG levels that may indicate coeliac disease, but also need the biopsy.

(Says another type of AHP!)

yes, you can. As a Coeliac myself I had severe symptoms.

Was it official nhs blood test or some random private allergy test?
No stool sample is used for coeliac diagnosis

Stool sample? Absolutely not required for a coeliac test!
I'm from a massive family of coeliacs, some of us never had symptoms, others had lots but we all had the same tests.
An initial blood test and then a endoscopy to confirm diagnosis. This is how coeliacs is diagnosed in the uk.

I've never understood the desire to jump on the dietary requirement bandwagon unless absolutely necessary. I'd happily never touch gluten free food again and dearly wish I didn't have coeliacs!!!

I have no idea.

They have most certainly not had biopsies. AFAIK this is not being considered. Mum is presenting it as a done deal - they have coeliac and that's that.

I suspect that she has done one of those "intolerance" tests and is loving the drama of it all, irrespective of the damage to her kids. She has a bit of a history of huge drama over medical issues, repeated trips to A&E and there was a while when the kids were younger that she was referred to as Mrs Munchausen.

I guess what I mean is - why would you even test for coeliac without symptoms?

My DD had few of the gastric symptoms associated with coeliac disease and was actually being tested for other autoimmune diseases when her coeliac antibody test came back positive. Subsequent endoscopy and biopsies confirmed diagnosis. I believe it's unkind/unnecessary to start what can be a quite onerous diet unnecessarily and if her DS does need to have biopsies they'll need to introduce gluten back into their diet.
However, how old are her DSs? Children don't always need biopsies to confirm diagnosis. Also if a first degree relative has coeliac disease, your risk of it increases from 1:100 to 1:10 and you may not have been aware of symptoms.

I had no real symptoms, was tested because of ferritin levels. I know plenty of people who've had fairly vague symptoms too. There is a genetic element so testing siblings isn't that far fetched although it does sound like this diagnosis could be from a quack.

There's still options for them to eat in McDonald's if that's your worry :-)

Potentially you may test if deficiencies are picked up on a blood test, e.g. unexplained vitamin B12 or iron deficiency, in the absence of gastrointestinal symptoms. But otherwise I doubt they would get a test on the NHS, especially at the moment!

You can indeed have silent coeliac disease and having it with no symptoms is as serious as symptom coeliac disease as if you have coeliac disease and continue to eat gluten it raises your risk of cancer.

However they obviously don’t have a robust diagnosis. When Dd was initially diagnosed she did have a stool sample and blood sample but by the Gp. There was something in the stool sample which was raised which suggested coeliac disease, same for the blood test. The blood test was so raised it couldn’t be anything else however the nhs will only formally diagnose with an endoscopy. Which for kids is actually against European paediatric guidelines which say a blood test is sufficient. However that’s a proper nhs blood test not some sort of intolerance test.

Though interestingly enough Dd had a York intolerance test and it did say she was allergic to wheat and gluten. Her gastro consultant said those tests were a lot of bollocks.

And you’re right it’s stupid to label yourself as coeliac if you don’t need to be as it’s so restrictive especially when eating out. Dd is 19yo and used to it now but it’s still a pita when going out with friends. Or trying to grab a take out lunch when out for the day, etc. It’s not just a case of avoiding bread and pasta, it’s all the sauces, having stuff cooked in separate pans, can’t eat chips from the chippy if the oil has been used for the fish, etc.

However, how old are her DSs? Children don't always need biopsies to confirm diagnosis. Also if a first degree relative has coeliac disease, your risk of it increases from 1:100 to 1:10 and you may not have been aware of symptoms.

16 and 17. No other family members have coeliac. Mother has tested herself, and the boys' father and they are negative. Just the boys.

I know they can eat at McDonalds, it's just a lot to heap onto teens if you don't need to.

It might be worth considering that teenage boys may not be too forthcoming with descriptions and details. ‘Feeling odd’ could mean a lot of things.

My partner doesn’t seem to have a vocabulary to describe his health issues or discomfort . I suspect he has food intolerances and possibly IBS too, if not something more serious.

He describes it as a ‘sore tummy’,but won’t go into anymore detail.

I’ve seen the evidence in the toilet that something isn’t right! I’ve been encouraging him to talk to his doctor, and tell them that I have said it should be checked out because of XYZ. He really doesn’t like talking about it.

My son was very short and also had iron deficiency and diaorrhea when he was diagnosed by NHS blood test. As teenage boys they might want to keep those sort of symptoms to themselves!

It does sound a bit dodgy that she sent these samples off by post, why hasn’t she gone through the NHS for a proper diagnosis?

You absolutely can be asymptomatic, or like me, you can vague symptoms that weren’t really a big deal but since diagnosis and being GF realise just how crap they made you feel!!

I think you can be asymptomatic. But the thing I'd be concerned about is how legit the tests are. As you say it requires a big change in eating habits especially for most teenage boys. So I'd probably want something more than a random Internet test! I feel like an intolerance to something is perhaps abit different to a full blown as llergy or disease. But could be wrong. I'm lucky enough to have no food allergies or intolerances.

I had vague symptoms- found I had a family history of possibly brca gene and ran to dr in a panic about ovarian cancer - was asked to go in after blood tests so probably one of the few folk genuinely ok about finding I had coeliac - lucky dr considered it, I never had - so symptoms were beyond tired, aching and bloated, which fits an awful lot of stuff, especially at my age. I had the lovely endoscopy, and should have had another this year as Barrett’s was a potential finding as well, but can’t say I’m upset about that cancellation! Anyway, apart from the blood tests being suspect intolerance and coeliac are two completely separate things, and she shouldn’t be cutting out a major food group without medical input. I doubt nhs would follow up at moment unless very serious but you could have it done privately. Expect kids love their mum’s sharing by the way! Oh, and when my daughter moved back recently she was banned from throwing her gluten stuff around the kitchen, as previously had done, and we manage just fine with gluten free recipes, it’s not that big a deal to be honest. She gets her fix if biscuits in her room and other stuff when out.

YABU, you have have silent coeliacs - no symptoms.

I have coeliac disease and asymptotic. Was diagnosed 14 years ago. Had blood test and then intestinal biopsy to confirm diagnosis. I stick to a gluten free diet but when I have had gluten I have little or no reaction even to this day.

Some have said why don’t you just eat gluten if you don’t react but the issue there is if I do the internal damage is the same as someone who does react when eating gluten so long term I pay the price. I’ve been gluten free for 14 years however I won’t lie and say I have never had gluten either inadvertently or as a one off.

They have most certainly not had biopsies.

If you are only getting your information from her Facebook page, it is highly likely that she would not share details of her son's endoscopies.

I don't really see why it bothering you. At 16 and 17 they will have a say in their healthcare provision, if you don't like the facebook posts hit the snooze button.

You definitely don't need to have symptoms to have the disease.

My DNiece is a coeliac, she didn't have any symptoms when she was diagnosed over 10 years ago now.

They gave her a blood test after she developed Type 1 diabetes and found out she had it. She had it confirmed by a biopsy.

Now when she accidentally has gluten she gets a bad reaction but at the time of diagnoses she could eat what she wanted with no side effects.

My DD is coeliac and presented with general tiredness and lethargy plus persistent anaemia. She had the three antibody tests but no biopsy as 1) the 3rd antibody test is a very strong indicator 2) they try not to do biospsies on kids and 3) Covid suspended all the biopsies.
I'd be surprised if you can get all the three tests as a postal kit.

I have coeliac disease and was asymptomatic. My diagnosis came when I was accepted onto a medical research trial for another condition I have. They took numerous blood tests and my coeliac markers were very high. Proper diagnosis then followed, but I was gobsmacked as felt fine!

Just to add, diagnosis in children is by blood markers, no endoscopy is required. They are bringing similar diagnosis in for adults under 55 years with very blood levels I believe.

That should say very high blood levels!